Bad (but expected) 2 year appt, need support

Ariella's been in speech therapy once a week since early December. She has more "words" now but is still not really communicating with us. To try to help catch her up, we started her in school/daycare 3 days a week to get more socialization, language, and activity variety during the day. But, she's still different. We had her 2 year appointment on Monday, and her "M-CHAT" (the autism screening questionnaire) was abnormal. 3 wrong answers are grounds for concern, and I had to answer wrong for a lot more than that. Our pediatrician gave us a paper for TouchPoint autism center to get Ariella evaluated. I called them that same day. They emailed me the forms I had to fill out - over 25 pages! Plus, they needed a copy of her social security card and insurance card. But, the insurance doesn't pay for the assessment, which is $400. I filled all that out that night (which took well over 3 hours) and got things mailed, faxed, and emailed out Tuesday. They have to receive all the paperwork plus our credit card info before they will schedule her assessment. Plus, the earliest they can schedule as of Monday is early May! That seems so far away.

The 25+ pages of questions were so stressful. They alerted me to things that she does that I didn't even think of being questionable. I'm pretty sure her assessment is going to come back bad, with her needing 25+ hours of therapy per week (which is what seems to be recommended). I feel very sad and overwhelmed. Also, I don't know if it's me or a change in her, but almost all I see now are the scary behaviors that aren't "normal". I wonder what her future will be. I wonder if she'll ever call me Mama or if she'll ever say that she loves me. I'm also scared that Connor will have problems, too. Maybe our genetics put him at risk, too. I know there's no causal link between autism and vaccines, but I wonder if things would be different if I hadn't vaccinated her. I did all of Connor's 2 month vaccines. I hope that didn't mess him up, and I'm not doing any more for him until he's older. I can't risk the minuscule chance that our particular genetics might make him vulnerable to problems from the vaccines.

My husband and I both work. In fact, I just got a promotion. For the first time in over 5 years, I was actually really enjoying my work again. But what if Ariella needs all kinds of therapy? I don't see how that will work with 2 working parents. Our only family in town is DH's mother, and we don't trust her to drive either of the kids (she has diabetes and vision problems, plus problems with mechanical things, would have trouble with the car seat). My parents are unfortunately both dead. If Ariella does really have serious problems and needs significant therapy, will I have to give up my career? Before this promotion, that wouldn't have been a big deal (although my salary is almost half of our total income). But now I finally feel like I'm a really good fit at work. Before this I used to want to stay home with the kids - but not like this, not because of this. DH staying home is not an option. He wouldn't have the patience needed to stay home. Plus. He's a slightly higher earner. But, I don't see how she'll get the therapy she needs without one of us staying home.

It's very stressful. I know we haven't had the full "ADOS" evaluation and haven't received a diagnosis. But, the 25+ pages of questions made reality come crashing down on me. I haven't been able to concentrate at work since I got those papers, and I've been very depressed. I'm even thinking of taking a vacation day tomorrow just so I can regroup.

This morning when we dropped Ariella off at school, DH took her in. Another father came out and was getting to his car. His little girl was looking out the window from the school and was smiling, waving, and blowing kisses at him. It just made me cry, thinking Ariella may never be able to do that kind of thing. It breaks my heart. I hate having to wait until early May to get started. I wish I could do something for her much sooner. I really should have done the evaluation through the medical setting originally rather than through Parents as Teachers at first. I guess I just wanted to give her some more time. Plus, the new baby was coming.

I guess this was mostly just a vent. But any opinions and thoughts or support are welcome.

Ariella's been in speech therapy once a week since early December. She has more "words" now but is still not really communicating with us. To try to help catch her up, we started her in school/daycare 3 days a week to get more socialization, language, and activity variety during the day. But, she's still different. We had her 2 year appointment on Monday, and her "M-CHAT" (the autism screening questionnaire) was abnormal. 3 wrong answers are grounds for concern, and I had to answer wrong for a lot more than that. Our pediatrician gave us a paper for TouchPoint autism center to get Ariella evaluated. I called them that same day. They emailed me the forms I had to fill out - over 25 pages! Plus, they needed a copy of her social security card and insurance card. But, the insurance doesn't pay for the assessment, which is $400. I filled all that out that night (which took well over 3 hours) and got things mailed, faxed, and emailed out Tuesday. They have to receive all the paperwork plus our credit card info before they will schedule her assessment. Plus, the earliest they can schedule as of Monday is early May! That seems so far away.

The 25+ pages of questions were so stressful. They alerted me to things that she does that I didn't even think of being questionable. I'm pretty sure her assessment is going to come back bad, with her needing 25+ hours of therapy per week (which is what seems to be recommended). I feel very sad and overwhelmed. Also, I don't know if it's me or a change in her, but almost all I see now are the scary behaviors that aren't "normal". I wonder what her future will be. I wonder if she'll ever call me Mama or if she'll ever say that she loves me. I'm also scared that Connor will have problems, too. Maybe our genetics put him at risk, too. I know there's no causal link between autism and vaccines, but I wonder if things would be different if I hadn't vaccinated her. I did all of Connor's 2 month vaccines. I hope that didn't mess him up, and I'm not doing any more for him until he's older. I can't risk the minuscule chance that our particular genetics might make him vulnerable to problems from the vaccines.

My husband and I both work. In fact, I just got a promotion. For the first time in over 5 years, I was actually really enjoying my work again. But what if Ariella needs all kinds of therapy? I don't see how that will work with 2 working parents. Our only family in town is DH's mother, and we don't trust her to drive either of the kids (she has diabetes and vision problems, plus problems with mechanical things, would have trouble with the car seat). My parents are unfortunately both dead. If Ariella does really have serious problems and needs significant therapy, will I have to give up my career? Before this promotion, that wouldn't have been a big deal (although my salary is almost half of our total income). But now I finally feel like I'm a really good fit at work. Before this I used to want to stay home with the kids - but not like this, not because of this. DH staying home is not an option. He wouldn't have the patience needed to stay home. Plus. He's a slightly higher earner. But, I don't see how she'll get the therapy she needs without one of us staying home.

It's very stressful. I know we haven't had the full "ADOS" evaluation and haven't received a diagnosis. But, the 25+ pages of questions made reality come crashing down on me. I haven't been able to concentrate at work since I got those papers, and I've been very depressed. I'm even thinking of taking a vacation day tomorrow just so I can regroup.

This morning when we dropped Ariella off at school, DH took her in. Another father came out and was getting to his car. His little girl was looking out the window from the school and was smiling, waving, and blowing kisses at him. It just made me cry, thinking Ariella may never be able to do that kind of thing. It breaks my heart. I hate having to wait until early May to get started. I wish I could do something for her much sooner. I really should have done the evaluation through the medical setting originally rather than through Parents as Teachers at first. I guess I just wanted to give her some more time. Plus, the new baby was coming.

I guess this was mostly just a vent. But any opinions and thoughts or support are welcome.

I don't really know what to say, but I think you need some hugs! You are doing everything you can for her, and Ariella is lucky to have such a concerned, loving mommy. Even if she can't say it right now, she loves you very much!

I don't really know what to say, but I think you need some hugs! You are doing everything you can for her, and Ariella is lucky to have such a concerned, loving mommy. Even if she can't say it right now, she loves you very much!

Early intervention (before age 3) has been shown to produce great results. The spectrum is so large and I know it's hard not to think of the worst kid of autism. There are plenty of people who are on the spectrum that lead happy normal lives when they get the right therapy and learn to adjust where needed. I worry alot because my husband has a first cousin with Aspergers and that's the type that is normally a genetic link

Early intervention (before age 3) has been shown to produce great results. The spectrum is so large and I know it's hard not to think of the worst kid of autism. There are plenty of people who are on the spectrum that lead happy normal lives when they get the right therapy and learn to adjust where needed. I worry alot because my husband has a first cousin with Aspergers and that's the type that is normally a genetic link

I just want you to know I'm thinking of you and saying a special prayer for all of you. I know you'll do what's right when it comes to Ariella's care now that this has all come to the forefront. DON'T beat yourself up with the vaccine thing, although I understand why you're second guessing yourself. But seriously, without getting into a huge vaccine debate with others on this board, I'd completely put that out of your mind.

I just want you to know I'm thinking of you and saying a special prayer for all of you. I know you'll do what's right when it comes to Ariella's care now that this has all come to the forefront. DON'T beat yourself up with the vaccine thing, although I understand why you're second guessing yourself. But seriously, without getting into a huge vaccine debate with others on this board, I'd completely put that out of your mind.

Oh Joanna, I'm so sorry you are feeling this way. I don't have any advice other than do what you can to keep a positive attitude and love your little girl with everything you have. Sometimes life throws a curve ball and you have to find a way to make the best of it. I know it's hard, but you can't let this worry consume you, your kids will feel your tension. You will do right by your children and you will do anything and everything that is needed of you to help them, and deep down you know that too. You can't place blame and you can't feel guilty. You have a great support system here on this board and you will get through this one day at a time. We are here for you always. GREAT BIG HUGS!!!

Oh Joanna, I'm so sorry you are feeling this way. I don't have any advice other than do what you can to keep a positive attitude and love your little girl with everything you have. Sometimes life throws a curve ball and you have to find a way to make the best of it. I know it's hard, but you can't let this worry consume you, your kids will feel your tension. You will do right by your children and you will do anything and everything that is needed of you to help them, and deep down you know that too. You can't place blame and you can't feel guilty. You have a great support system here on this board and you will get through this one day at a time. We are here for you always. GREAT BIG HUGS!!!

I'm sorry you're going through this stress. I know it's a lot to process, and wanted to pass along that I was thinking about you. When my Connor's pediatrician suspected autism at his 12 month appointment my husband was out of town and I found it totally overwhelming. If it's any comfort to you, I have a friend with identical twins, one of whom is autistic and the other of whom is completely normal. Anecdotal, I know, but in her case autism isn't genetic or environmental so hopefully that lets you worry less about your Connor. When we first started speech therapy for Connor last summer we started with a clinic that was recommending 20 hours/week of therapy for him and was prepared to submit an autism spectrum diagnosis to our insurance company at 18 months. The therapies they wanted to use with him were food-based reinforcers, which apparently are very effective for autism spectrum learning. It all felt very extreme to me, so we took him somewhere else for another opinion. The second place we went said they don't go to an autism spectrum diagnosis until kids are 3 except for very extreme cases. They use traditional play-based therapies and no food reinforcers (therapy was 2 days/week for the past 8 months). We also enrolled him in "school" 3 days/week to improve his social interaction. As Connor learned more words in therapy his more social-based skills like eye contact improved as well. Improvement was very slow at first but picked up a lot after a couple months of therapy. I don't know what Ariella's delays are, but just letting you know about our experience with a less extreme route. I should also note that my mom radar said Connor would do better in a less extreme setting. If she does turn out to need extensive therapy does that mean you need a stay-at-home parent? Is a nanny an option for your family - someone who could take Ariella to therapy appointments and work with her at home while you're at work? I'll be thinking about you.

I'm sorry you're going through this stress. I know it's a lot to process, and wanted to pass along that I was thinking about you. When my Connor's pediatrician suspected autism at his 12 month appointment my husband was out of town and I found it totally overwhelming. If it's any comfort to you, I have a friend with identical twins, one of whom is autistic and the other of whom is completely normal. Anecdotal, I know, but in her case autism isn't genetic or environmental so hopefully that lets you worry less about your Connor. When we first started speech therapy for Connor last summer we started with a clinic that was recommending 20 hours/week of therapy for him and was prepared to submit an autism spectrum diagnosis to our insurance company at 18 months. The therapies they wanted to use with him were food-based reinforcers, which apparently are very effective for autism spectrum learning. It all felt very extreme to me, so we took him somewhere else for another opinion. The second place we went said they don't go to an autism spectrum diagnosis until kids are 3 except for very extreme cases. They use traditional play-based therapies and no food reinforcers (therapy was 2 days/week for the past 8 months). We also enrolled him in "school" 3 days/week to improve his social interaction. As Connor learned more words in therapy his more social-based skills like eye contact improved as well. Improvement was very slow at first but picked up a lot after a couple months of therapy. I don't know what Ariella's delays are, but just letting you know about our experience with a less extreme route. I should also note that my mom radar said Connor would do better in a less extreme setting. If she does turn out to need extensive therapy does that mean you need a stay-at-home parent? Is a nanny an option for your family - someone who could take Ariella to therapy appointments and work with her at home while you're at work? I'll be thinking about you.

One other thought: what are Ariella's speech therapist's thoughts on the autism spectrum question? Does he/she think extensive therapy and further evaluation is necessary? My radar is up at the fees part of her assessment. We spent almost $3000 out of pocket for Connor's initial eval and a single week of therapy at the first center, and the extreme diagnosis and treatment ended up feeling very profit motivated to me. I'm sorry to relay such skepticism, but we had a pretty bad experience overall. I'm sure that's not the case where you're having her evaluated (is it a for-profit center? I'm not familiar with the name).

One other thought: what are Ariella's speech therapist's thoughts on the autism spectrum question? Does he/she think extensive therapy and further evaluation is necessary? My radar is up at the fees part of her assessment. We spent almost $3000 out of pocket for Connor's initial eval and a single week of therapy at the first center, and the extreme diagnosis and treatment ended up feeling very profit motivated to me. I'm sorry to relay such skepticism, but we had a pretty bad experience overall. I'm sure that's not the case where you're having her evaluated (is it a for-profit center? I'm not familiar with the name).

Thanks all for the support. I'm still quite shaken, but I did go to work today. I wasn't very focused, but oh well. Plus, I think I have an ear infection, so I made an ENT appt for tomorrow. Super fun. I contacted my insurance company, and they gave me the name of an in-network provider who does evaluations. I called and emailed her. She called me back and left a voicemail. She does the CARS assessment. It sounded like she could see Ariella soon, so I'm going to get in touch with her tomorrow to schedule an appointment. We'll probably still do the ADOS, too, in May. We'll see.

Some of Ariella's issues are: problems with eye contact, language delays (can speak some words but not really used to communicate, no 2 word phrases or anything), does not point, does not wave hello or bye, we have a hard time getting her attention or to respond to her name especially if she's focused, no pretend play, she collects things (such as DVD cases, little circles, books, cards) and puts them in piles and keeps moving the things between different piles back and forth (she does this all the time, even at her doctors appt Monday with the books in the toy bin), to get what she wants, she drags us by the hand to the object and throws our hand towards what she wants (like a door knob, up to a cabinet, etc) rather than pointing or gesturing or verbalizing. She has a hard time transitioning between activities, especially if she's focused on something. She sometimes wanders or walks in circles or spins. Is unable to follow simple directions (with a few exceptions).

Some positives: She does smile and laugh quite a lot. She doesn't have any kinds of sensory issues other than the vacuum cleaner upsets her. No problems with textures. Not a picky eater. Sleeps well. Touching or holding her doesn't upset her. She even gives me hugs and likes to snuggle, especially if she's getting tired. She loves music and likes to sing (not with real words, but with babbling to the tunes).

I just emailed her speech therapist, letting her know what's going on. I wasn't feeling up to a conversation yesterday, so I didn't mention it at the Wed session. I'll have to see what she says.

Thanks all for the support. I'm still quite shaken, but I did go to work today. I wasn't very focused, but oh well. Plus, I think I have an ear infection, so I made an ENT appt for tomorrow. Super fun. I contacted my insurance company, and they gave me the name of an in-network provider who does evaluations. I called and emailed her. She called me back and left a voicemail. She does the CARS assessment. It sounded like she could see Ariella soon, so I'm going to get in touch with her tomorrow to schedule an appointment. We'll probably still do the ADOS, too, in May. We'll see.

Some of Ariella's issues are: problems with eye contact, language delays (can speak some words but not really used to communicate, no 2 word phrases or anything), does not point, does not wave hello or bye, we have a hard time getting her attention or to respond to her name especially if she's focused, no pretend play, she collects things (such as DVD cases, little circles, books, cards) and puts them in piles and keeps moving the things between different piles back and forth (she does this all the time, even at her doctors appt Monday with the books in the toy bin), to get what she wants, she drags us by the hand to the object and throws our hand towards what she wants (like a door knob, up to a cabinet, etc) rather than pointing or gesturing or verbalizing. She has a hard time transitioning between activities, especially if she's focused on something. She sometimes wanders or walks in circles or spins. Is unable to follow simple directions (with a few exceptions).

Some positives: She does smile and laugh quite a lot. She doesn't have any kinds of sensory issues other than the vacuum cleaner upsets her. No problems with textures. Not a picky eater. Sleeps well. Touching or holding her doesn't upset her. She even gives me hugs and likes to snuggle, especially if she's getting tired. She loves music and likes to sing (not with real words, but with babbling to the tunes).

I just emailed her speech therapist, letting her know what's going on. I wasn't feeling up to a conversation yesterday, so I didn't mention it at the Wed session. I'll have to see what she says.

Hi Mel,
So, TouchPoint is not-for-profit: http://www.touchpointautism.org. Wow, $3000 is a lot of money for an initial assessment and week of therapy. TouchPoint said that our insurance should cover any therapy - just not the initial assessment, although some families have been able to get reimbursed for the assessment after the fact (whether or not that's true for my insurance, who knows).
What kinds of assessments did they do for Connor? 12 months is very young to be diagnosing autism and starting 20 hours a week of therapy. What indicators besides speech delay did they see? Do you remember the names of any of the tests? I have a psychological research background (was in a clinical psych doctoral program with a heavy emphasis on research before leaving to work in the computer software industry. I've been researching the tests that they're talking about doing for Ariella.
I actually found a sample filled-out ADOS of a little boy who was diagnosed with autism. I filled it out based on how I thought Ariella might do if she took it (with ranges of answers just based on how she normally acts). Taking the most normal of the range of answers, she was over the cutoff for autism. There were 2 cutoffs, 1 for PDD and 1 for autism. Granted, doing that was completely not reliable since I didn't do the test and don't have any training in it. But, it was an indicator to me that something is really going on - that she's definitely not just a "late-bloomer".
So, Connor goes to therapy twice a week now? How many hours each of the 2 days? Ariella is also in daycare/school 3 days per week. I'm not sure that I've really seen her socializing per say much, though. When I view her over the internet at the school, she's often off by herself or just wandering around. I'll have to see how she does this weekend. She was invited to one of the little girl's birthday party at an inflatable jump place.
Besides learning new words, how has Connor progressed with the therapy? Does he actually communicate with you (rather than simply naming things)? How does he indicate that he wants things? Does he call you Mama?
I'm not sure if ABA is the right route for Ariella or not. I do know that yesterday I started being consistent with her for transitions (saying 1 more minute and then a little later saying 5,4,3,2,1, all done and then moving her onto the next thing), and that seemed to help. I think she really needs consistency, which we're not very good with.
I'm not sure what it means if she needs intensive therapy. But, if intensive therapy for a year or 2 could make a huge difference in her life, how could I not sacrifice whatever I'd have to for her? I suppose a nanny might be possible. I hadn't even thought of that. She'd need to be more than a typical nanny, though. Maybe TouchPoint would have suggestions on an in-home type therapist. MIL could still be there to watch Ariella, but the therapist could come for the therapy however much they need. I think I've heard of that as an option.
I think this in-network doctor, though, does less intensive intervention. She mentioned that they have a speech therapist, an occupational therapist, and a developmental something or other. I don't think she mentioned ABA.

Hi Mel,
So, TouchPoint is not-for-profit: http://www.touchpointautism.org. Wow, $3000 is a lot of money for an initial assessment and week of therapy. TouchPoint said that our insurance should cover any therapy - just not the initial assessment, although some families have been able to get reimbursed for the assessment after the fact (whether or not that's true for my insurance, who knows).
What kinds of assessments did they do for Connor? 12 months is very young to be diagnosing autism and starting 20 hours a week of therapy. What indicators besides speech delay did they see? Do you remember the names of any of the tests? I have a psychological research background (was in a clinical psych doctoral program with a heavy emphasis on research before leaving to work in the computer software industry. I've been researching the tests that they're talking about doing for Ariella.
I actually found a sample filled-out ADOS of a little boy who was diagnosed with autism. I filled it out based on how I thought Ariella might do if she took it (with ranges of answers just based on how she normally acts). Taking the most normal of the range of answers, she was over the cutoff for autism. There were 2 cutoffs, 1 for PDD and 1 for autism. Granted, doing that was completely not reliable since I didn't do the test and don't have any training in it. But, it was an indicator to me that something is really going on - that she's definitely not just a "late-bloomer".
So, Connor goes to therapy twice a week now? How many hours each of the 2 days? Ariella is also in daycare/school 3 days per week. I'm not sure that I've really seen her socializing per say much, though. When I view her over the internet at the school, she's often off by herself or just wandering around. I'll have to see how she does this weekend. She was invited to one of the little girl's birthday party at an inflatable jump place.
Besides learning new words, how has Connor progressed with the therapy? Does he actually communicate with you (rather than simply naming things)? How does he indicate that he wants things? Does he call you Mama?
I'm not sure if ABA is the right route for Ariella or not. I do know that yesterday I started being consistent with her for transitions (saying 1 more minute and then a little later saying 5,4,3,2,1, all done and then moving her onto the next thing), and that seemed to help. I think she really needs consistency, which we're not very good with.
I'm not sure what it means if she needs intensive therapy. But, if intensive therapy for a year or 2 could make a huge difference in her life, how could I not sacrifice whatever I'd have to for her? I suppose a nanny might be possible. I hadn't even thought of that. She'd need to be more than a typical nanny, though. Maybe TouchPoint would have suggestions on an in-home type therapist. MIL could still be there to watch Ariella, but the therapist could come for the therapy however much they need. I think I've heard of that as an option.
I think this in-network doctor, though, does less intensive intervention. She mentioned that they have a speech therapist, an occupational therapist, and a developmental something or other. I don't think she mentioned ABA.

Great big hugs coming your way:) I know exactly were you are at. The thought of lossing the normal life that you felt your daughter would live and the one that she will end up with are no longer the same. Nicole having DS is so much different because of the fact that we have known from the second I saw her so I was able to go through that grieving process early and just concentrate on my baby. And let me tell you the thoughts that went through my mind back then were so nightmareish and it is so much different then I thought. Early intervention is so key. I was lucky that I was able to do therapy's on mon and wed mornings, when I was off work, but I completely understand the lonely feeling cause both our moms are gone and his dad is gone. Nicole has done so much more then the doctors said she would do so please do not go by what they say Ariella will do!! She is her own person and she will surprise you. I had a client that's son came into get a haircut and he hated it. He would scream at the top of his lungs and had to be pysically restrained to get the cut done. We did this for about 7-8 haircuts and the grandma asked when I thought he would get used to it and I told her I thought he had some form of autism, she was not shocked, cause he was being evaluated for it. The next haircut which was 6 weeks later he had started therapy and he sat all by himself for his haircut. I was floored at what therapy had done for him. He was 3 then and now he is 9 and he is doing great. We are all here for you and I am glad you found someone to evaluate her sooner cause it will make all the difference:)

Great big hugs coming your way:) I know exactly were you are at. The thought of lossing the normal life that you felt your daughter would live and the one that she will end up with are no longer the same. Nicole having DS is so much different because of the fact that we have known from the second I saw her so I was able to go through that grieving process early and just concentrate on my baby. And let me tell you the thoughts that went through my mind back then were so nightmareish and it is so much different then I thought. Early intervention is so key. I was lucky that I was able to do therapy's on mon and wed mornings, when I was off work, but I completely understand the lonely feeling cause both our moms are gone and his dad is gone. Nicole has done so much more then the doctors said she would do so please do not go by what they say Ariella will do!! She is her own person and she will surprise you. I had a client that's son came into get a haircut and he hated it. He would scream at the top of his lungs and had to be pysically restrained to get the cut done. We did this for about 7-8 haircuts and the grandma asked when I thought he would get used to it and I told her I thought he had some form of autism, she was not shocked, cause he was being evaluated for it. The next haircut which was 6 weeks later he had started therapy and he sat all by himself for his haircut. I was floored at what therapy had done for him. He was 3 then and now he is 9 and he is doing great. We are all here for you and I am glad you found someone to evaluate her sooner cause it will make all the difference:)

Thanks for the insight. Ariella's evaluation is scheduled for May 7, but I'm still going to try to get her scheduled with the other provider sooner as well. To complicate things further, it seems like there is a link between terbutaline and autism. The FDA changed it's classification in pregnancy since when I was pregnant with Ariella. Plus, it's not even approved for treatment of pre-term labor even though doctors prescribe it for that all the time. There seem to be all kinds of lawsuits regarding it. If that is indeed what left Ariella susceptible, then it's both disturbing and relieving. Relieving because Connor would most likely be fine, but disturbing because it would have been something that I did that damaged her. Regardless, I need to focus on getting her evaluated as well as researching potential treatments so that I will be informed if she does have autism.

Thanks for the insight. Ariella's evaluation is scheduled for May 7, but I'm still going to try to get her scheduled with the other provider sooner as well. To complicate things further, it seems like there is a link between terbutaline and autism. The FDA changed it's classification in pregnancy since when I was pregnant with Ariella. Plus, it's not even approved for treatment of pre-term labor even though doctors prescribe it for that all the time. There seem to be all kinds of lawsuits regarding it. If that is indeed what left Ariella susceptible, then it's both disturbing and relieving. Relieving because Connor would most likely be fine, but disturbing because it would have been something that I did that damaged her. Regardless, I need to focus on getting her evaluated as well as researching potential treatments so that I will be informed if she does have autism.

what's a beautiful name you gave your daughter . . .thanks for sharing your story . . I think that once you identify/learn what's is 'normal' for ariella, you'll be better able to help her, and you will be better able to cope with how she learns and her behavioral differences. Part of the difuculty is the expectations of trying to get her to respond or react the same as other children . . .which if ariella is autistic maybe not be possible . . . focus on learning about how she perceives the world and adjust to her because she cannot adjust to your world and what is consider normal . . . you shouldn't blame yourself and emotionaly drain yourself further with what's ifs . . .you are being a good mother. . . take it one day at a time. . .

what's a beautiful name you gave your daughter . . .thanks for sharing your story . . I think that once you identify/learn what's is 'normal' for ariella, you'll be better able to help her, and you will be better able to cope with how she learns and her behavioral differences. Part of the difuculty is the expectations of trying to get her to respond or react the same as other children . . .which if ariella is autistic maybe not be possible . . . focus on learning about how she perceives the world and adjust to her because she cannot adjust to your world and what is consider normal . . . you shouldn't blame yourself and emotionaly drain yourself further with what's ifs . . .you are being a good mother. . . take it one day at a time. . .

Joanna, just saw this post... I'm so sorry you are going through all of this. I can't imagine the rollercoaster of emotions. Like a few others have said, early intervention does wonders. She's going to do fantastic! Try to keep seeing her the way you always have, your beautiful little girl. Lots of hugs for you, keep us all updated.

Joanna, just saw this post... I'm so sorry you are going through all of this. I can't imagine the rollercoaster of emotions. Like a few others have said, early intervention does wonders. She's going to do fantastic! Try to keep seeing her the way you always have, your beautiful little girl. Lots of hugs for you, keep us all updated.

Take all my comments in this with a grain of salt: I understand the importance of early diagnosis and intervention in developmental disorders, but we had a particularly challenging experience which has caused me to be a bit skeptical about extreme early interventions for non-severe cases.

We started our adventure with a referral from our pediatrician at 12 months to the State of Florida's Early Steps program. They evaluated him but said 12 months was too early to start therapy. Fast forward to June: Went back to the pediatrician who was very upset that we didn't pursue therapy elsewhere after being turned away from the State's program, and referred us to a place called Keystone, which was focused on pediatric behavioral and psychological issues. That place did a VB-MAPP screen for him. It was completed in June 2011 (he was 16 months old). Based on the results they referred us to a child psychiatrist on his 18 month birthday for an ADOS assessment. They noted significant problems/delays in the following areas: instructional control, manding, tacting, echoic, imitation, listening, intraverbal, scanning, conditional discrimination, reinforcer dependency, articulation, and eye contact. I don't remember what some of those things mean. The only areas he was considered "normal" in were behavioral: no significant behavior problems, social skills were ok, self stimulation normal, no OCD behavior, no sensory defensiveness. The bottom line was that at 16 months old this therapy center told us they felt there was a 99% chance he would be diagnosed with an autism spectrum disorder at his 18 month ADOS screen and recommended LOTS of therapy for him starting right away. (Side note part of this story - they had some very young therapist call us to deliver this news, and she had no idea how to "handle" a parent in that situation. It was a mess.) After our first invoice - which we ultimately negotiated down from $3000 to $2000 for the evaluation plus two therapy sessions - we were beside ourselves. We asked the same questions you're asking about intensive therapy - if this therapy could make such a difference in his life how could we NOT do it, but at more than $100k out of pocket in just a year I had no idea how we could possibly afford it?

That was ultimately why we got another opinion - from a speech therapist who was in network with our insurance rather than a group focused on psychological and behavioral treatment. Their advice to us after the initial evaluation ($300 out of pocket, which seemed like a bargain by comparison) was that he was definitely language delayed, but they very strongly disagreed with using food reinforcers at such a young age and very strongly disagreed with the autism quasi-diagnosis and recommendation for so much therapy. Except in very extreme cases they don't recommend testing kids for autism spectrum disorders until 3 years or older. They suggested we try 2x/week and go from there. Connor started speech therapy with that center in July 2011 and has been going twice a week since (his sessions are about 45 minutes, and they give us homework to work on in between. The focus at the center is wanting for it to feel like play to him, and that's about the outside of his attention span.). He also started preschool 3 days/week in August. We didn't see a lot of progress for the first couple months. He would use some words, and the majority of the progress we saw was actually with the few signs they taught him ("more" and "all done" were particularly useful ones for us). Starting in November we started to see real progress with him. He was using more words to indicate when he wanted something, and lots more labeling. We also noticed that about 1/3 of his words were not English, which I think was largely the reason for his delay to begin with, and which I'm actually pretty jazzed about.

Contributing even more to my skepticism about jumping to an early diagnosis of autism: at that evaluation at Keystone in June they were 99% sure he was autistic; at his two-year development screening at his pediatrician's office, where they are notoriously conservative, they said he had no markers at all for an autism spectrum disorder. I find it hard to believe it just went away in 8 months, and at least in our situation I think we had a late bloomer on our hands.

As far as where he is now, he went from expressive language at an 8-month-old level in July to 24 months in February (he was re-evaluated on his birthday). His receptive language skills are still delayed, but we are now looking into the State's (free) program to continue therapy since these therapy sessions have also not been covered by insurance. (Long story there - they're a covered benefit from an in-network provider, but after our third appeal I've pretty much given up hope.) He does say "mama" and does communicate with words, but I feel like a broken record saying "use your words" for months and months because he still starts out whining. The communication really didn't come until he had a pretty wide vocabulary. He points consistently now, which is a skill he's picked up since the first of the year, but still doesn't really wave (except to lizards. such a boy.).

I hope that helps. It sounds like with your background you understand these evaluations and developmental issues way better than I do, but just offering one mom's winding road of an adventure. How did the weekend party go? Any thoughts from her speech therapist?

Take all my comments in this with a grain of salt: I understand the importance of early diagnosis and intervention in developmental disorders, but we had a particularly challenging experience which has caused me to be a bit skeptical about extreme early interventions for non-severe cases.

We started our adventure with a referral from our pediatrician at 12 months to the State of Florida's Early Steps program. They evaluated him but said 12 months was too early to start therapy. Fast forward to June: Went back to the pediatrician who was very upset that we didn't pursue therapy elsewhere after being turned away from the State's program, and referred us to a place called Keystone, which was focused on pediatric behavioral and psychological issues. That place did a VB-MAPP screen for him. It was completed in June 2011 (he was 16 months old). Based on the results they referred us to a child psychiatrist on his 18 month birthday for an ADOS assessment. They noted significant problems/delays in the following areas: instructional control, manding, tacting, echoic, imitation, listening, intraverbal, scanning, conditional discrimination, reinforcer dependency, articulation, and eye contact. I don't remember what some of those things mean. The only areas he was considered "normal" in were behavioral: no significant behavior problems, social skills were ok, self stimulation normal, no OCD behavior, no sensory defensiveness. The bottom line was that at 16 months old this therapy center told us they felt there was a 99% chance he would be diagnosed with an autism spectrum disorder at his 18 month ADOS screen and recommended LOTS of therapy for him starting right away. (Side note part of this story - they had some very young therapist call us to deliver this news, and she had no idea how to "handle" a parent in that situation. It was a mess.) After our first invoice - which we ultimately negotiated down from $3000 to $2000 for the evaluation plus two therapy sessions - we were beside ourselves. We asked the same questions you're asking about intensive therapy - if this therapy could make such a difference in his life how could we NOT do it, but at more than $100k out of pocket in just a year I had no idea how we could possibly afford it?

That was ultimately why we got another opinion - from a speech therapist who was in network with our insurance rather than a group focused on psychological and behavioral treatment. Their advice to us after the initial evaluation ($300 out of pocket, which seemed like a bargain by comparison) was that he was definitely language delayed, but they very strongly disagreed with using food reinforcers at such a young age and very strongly disagreed with the autism quasi-diagnosis and recommendation for so much therapy. Except in very extreme cases they don't recommend testing kids for autism spectrum disorders until 3 years or older. They suggested we try 2x/week and go from there. Connor started speech therapy with that center in July 2011 and has been going twice a week since (his sessions are about 45 minutes, and they give us homework to work on in between. The focus at the center is wanting for it to feel like play to him, and that's about the outside of his attention span.). He also started preschool 3 days/week in August. We didn't see a lot of progress for the first couple months. He would use some words, and the majority of the progress we saw was actually with the few signs they taught him ("more" and "all done" were particularly useful ones for us). Starting in November we started to see real progress with him. He was using more words to indicate when he wanted something, and lots more labeling. We also noticed that about 1/3 of his words were not English, which I think was largely the reason for his delay to begin with, and which I'm actually pretty jazzed about.

Contributing even more to my skepticism about jumping to an early diagnosis of autism: at that evaluation at Keystone in June they were 99% sure he was autistic; at his two-year development screening at his pediatrician's office, where they are notoriously conservative, they said he had no markers at all for an autism spectrum disorder. I find it hard to believe it just went away in 8 months, and at least in our situation I think we had a late bloomer on our hands.

As far as where he is now, he went from expressive language at an 8-month-old level in July to 24 months in February (he was re-evaluated on his birthday). His receptive language skills are still delayed, but we are now looking into the State's (free) program to continue therapy since these therapy sessions have also not been covered by insurance. (Long story there - they're a covered benefit from an in-network provider, but after our third appeal I've pretty much given up hope.) He does say "mama" and does communicate with words, but I feel like a broken record saying "use your words" for months and months because he still starts out whining. The communication really didn't come until he had a pretty wide vocabulary. He points consistently now, which is a skill he's picked up since the first of the year, but still doesn't really wave (except to lizards. such a boy.).

I hope that helps. It sounds like with your background you understand these evaluations and developmental issues way better than I do, but just offering one mom's winding road of an adventure. How did the weekend party go? Any thoughts from her speech therapist?

Thanks, Mel, for the extra info. We actually got Ariella in Saturday to see the in-network provider who does autism evaluations. I'm a bit skeptical of her, though. She seemed to have Ariella diagnosed before we even walked in the door. After a whole 1 hour, she thinks that Ariella is definitely on the spectrum, and in the autism range rather than PDD. Granted, she's probably correct, but I don't think how she got to the conclusion was very good. But, what do I know? We're going back to her once more so that she can finish up, and then I think we can get Ariella started with some extra services until her more thorough May 7 evaluation. Ariella had so much fun at the birthday party! We went on all these huge inflatables. She especially loved these huge inflatable slides. But... She started doing hand flapping. I noticed it for the first time at the party. She did it a lot, I guess because she was excited. I also noticed her do it at home later in the day as well. Also, she was the only kid at the party who wasn't able to use a spoon with the cake. Luckily I stayed with her and made sure her mess didn't disrupt the party any. But, it was very evident to me that she was not at the same level as the other kids. Also, the other kids were all able to communicate and seemed to understand things. At least she seemed to have a great time. One of the other little girls was afraid of the inflatables and was crying. Ariella had big smiles while doing the slides with me. I also got Ariella scheduled for an eye doctor appointment for this coming Saturday. We'll schedule her ear appointment once her pediatrician says that her ear infection has cleared up. I'm happy she doesn't seem to have any big sensory problems (like textures, crowds of people, etc), and she shows happy emotions and is affectionate. I think those are good signs. But, she definitely has more going on than just language delay. It sounds like maybe your Connor isn't autistic or maybe is on the very lesser end of it. How did you get him to point? That seems to be an important milestone.

Thanks, Mel, for the extra info. We actually got Ariella in Saturday to see the in-network provider who does autism evaluations. I'm a bit skeptical of her, though. She seemed to have Ariella diagnosed before we even walked in the door. After a whole 1 hour, she thinks that Ariella is definitely on the spectrum, and in the autism range rather than PDD. Granted, she's probably correct, but I don't think how she got to the conclusion was very good. But, what do I know? We're going back to her once more so that she can finish up, and then I think we can get Ariella started with some extra services until her more thorough May 7 evaluation. Ariella had so much fun at the birthday party! We went on all these huge inflatables. She especially loved these huge inflatable slides. But... She started doing hand flapping. I noticed it for the first time at the party. She did it a lot, I guess because she was excited. I also noticed her do it at home later in the day as well. Also, she was the only kid at the party who wasn't able to use a spoon with the cake. Luckily I stayed with her and made sure her mess didn't disrupt the party any. But, it was very evident to me that she was not at the same level as the other kids. Also, the other kids were all able to communicate and seemed to understand things. At least she seemed to have a great time. One of the other little girls was afraid of the inflatables and was crying. Ariella had big smiles while doing the slides with me. I also got Ariella scheduled for an eye doctor appointment for this coming Saturday. We'll schedule her ear appointment once her pediatrician says that her ear infection has cleared up. I'm happy she doesn't seem to have any big sensory problems (like textures, crowds of people, etc), and she shows happy emotions and is affectionate. I think those are good signs. But, she definitely has more going on than just language delay. It sounds like maybe your Connor isn't autistic or maybe is on the very lesser end of it. How did you get him to point? That seems to be an important milestone.

Your Saturday experience would have rubbed me the wrong way too. It's a bit like our first "consultation" with Keystone - for which we were billed, of course. The therapist did not say a single word to Connor during the entire hour. Did not even look at him most of the time. I was very unhappy about that. On the self feeding front, Connor is also delayed there but I'm 99% sure it's because we don't give him opportunities to self feed at home. We've finally had to force ourselves to do it, and he seems to be improving very quickly. For pointing, it was just repetition. For the first month he finally started pointing to things he called everything "this", and I realized I needed to stop doing that in order to get him to use more words. :) His speech therapist spent a lot of time working on pointing too. Does your speech therapist teach signing? For Connor, I really think signing was the first time his brain put it together that he could communicate something and get a specific result. The language definitely came after that. Out of curiosity, does your MIL speak English at home? So glad Ariella had such a good time at the party! (Side note: really wish I could do paragraphs in the app!)

Your Saturday experience would have rubbed me the wrong way too. It's a bit like our first "consultation" with Keystone - for which we were billed, of course. The therapist did not say a single word to Connor during the entire hour. Did not even look at him most of the time. I was very unhappy about that. On the self feeding front, Connor is also delayed there but I'm 99% sure it's because we don't give him opportunities to self feed at home. We've finally had to force ourselves to do it, and he seems to be improving very quickly. For pointing, it was just repetition. For the first month he finally started pointing to things he called everything "this", and I realized I needed to stop doing that in order to get him to use more words. :) His speech therapist spent a lot of time working on pointing too. Does your speech therapist teach signing? For Connor, I really think signing was the first time his brain put it together that he could communicate something and get a specific result. The language definitely came after that. Out of curiosity, does your MIL speak English at home? So glad Ariella had such a good time at the party! (Side note: really wish I could do paragraphs in the app!)

We tried doing some signs (more, all done), and she did the one for more for a while. But she's stopped doing it for several months now and won't seem to even try it anymore. She never did do all done. That would be a really useful one. Today I started actively teaching her to point (pointing her hand for her). I don't think she understood at all, but I guess it takes a lot of repetition. I think MIL speaks both Spanish and English around her. At this point, though, I'll be thrilled if she can just speak any language. She did more hand flapping today, so maybe not a fluke. But she's still affectionate and shows happiness. I just hope she doesn't lose that. It's so scary not knowing how things will progress. I hope she can get some better therapies soon. I don't want her to slip away.

We tried doing some signs (more, all done), and she did the one for more for a while. But she's stopped doing it for several months now and won't seem to even try it anymore. She never did do all done. That would be a really useful one. Today I started actively teaching her to point (pointing her hand for her). I don't think she understood at all, but I guess it takes a lot of repetition. I think MIL speaks both Spanish and English around her. At this point, though, I'll be thrilled if she can just speak any language. She did more hand flapping today, so maybe not a fluke. But she's still affectionate and shows happiness. I just hope she doesn't lose that. It's so scary not knowing how things will progress. I hope she can get some better therapies soon. I don't want her to slip away.

I'll be thinking about you - keep me posted on what direction you go with therapy. I was terrified about Connor's progression when he was a "sure thing" for an autism diagnosis too. I finally got so exhausted by the stress, and was so crazy about my happy and affectionate kid, that I decided that if this is what autism is then fine, I'm glad to have an autistic child. I think I was really and truly afraid that once he got that diagnosis then he would magically stop being my kid and start being what I think of as a stereotypical autistic child, which was really scary. Fingers crossed that you find a therapy and therapist that really click with Ariella.

I'll be thinking about you - keep me posted on what direction you go with therapy. I was terrified about Connor's progression when he was a "sure thing" for an autism diagnosis too. I finally got so exhausted by the stress, and was so crazy about my happy and affectionate kid, that I decided that if this is what autism is then fine, I'm glad to have an autistic child. I think I was really and truly afraid that once he got that diagnosis then he would magically stop being my kid and start being what I think of as a stereotypical autistic child, which was really scary. Fingers crossed that you find a therapy and therapist that really click with Ariella.

Thanks for asking! We're doing well. Ariella was indeed diagnosed with autism (on the milder end) in May. We have her in a special needs focused daycare. She's doing ABA 3 times a week, speech therapy once a week, and a special class once a week. We're also still doing the gluten free casein free diet. DH and I went to a parent workshop on autism yesterday. Ariella is still a sweetheart. She's also progressing with language. She can say that I'm mama, and DH is Dada, and she's even able to say her name now! She can request things like apple, nana (banana), up (to be picked up), and she loves to sing. She's still way behind, but she's progressing, which is the important thing. She's working really hard in her therapies. I'm over the emotional roller coaster mostly. I'm mainly focused on making sure she gets the help she needs. Life requires a lot of extra energy, which I don't always have, but we're making due. Thanks again for checking on me.

Thanks for asking! We're doing well. Ariella was indeed diagnosed with autism (on the milder end) in May. We have her in a special needs focused daycare. She's doing ABA 3 times a week, speech therapy once a week, and a special class once a week. We're also still doing the gluten free casein free diet. DH and I went to a parent workshop on autism yesterday. Ariella is still a sweetheart. She's also progressing with language. She can say that I'm mama, and DH is Dada, and she's even able to say her name now! She can request things like apple, nana (banana), up (to be picked up), and she loves to sing. She's still way behind, but she's progressing, which is the important thing. She's working really hard in her therapies. I'm over the emotional roller coaster mostly. I'm mainly focused on making sure she gets the help she needs. Life requires a lot of extra energy, which I don't always have, but we're making due. Thanks again for checking on me.

Glad to hear that things are going well. It must be some relief that she is on the milder side. Sounds like she is progressing really well! She is such a pretty little girl. Yes I bet things are very busy..your little guy is adorable...LOVE the tux! We are doing good. Myles' speech is also on the slow side and he has been diagnosed with a mild/moderate speech delay. The speech therapist thinks he might have mild Apraxia. He is going to start speech therapy at the end of the month. He is quite the character and is constantly bugging his big brother! Trehson will be starting kindergarten in Sept and Myles is going to go to preschool 2 days a week. I might actually get a morning or two that is kidless...woohoo!! Take care and best of luck with everything.

Glad to hear that things are going well. It must be some relief that she is on the milder side. Sounds like she is progressing really well! She is such a pretty little girl. Yes I bet things are very busy..your little guy is adorable...LOVE the tux! We are doing good. Myles' speech is also on the slow side and he has been diagnosed with a mild/moderate speech delay. The speech therapist thinks he might have mild Apraxia. He is going to start speech therapy at the end of the month. He is quite the character and is constantly bugging his big brother! Trehson will be starting kindergarten in Sept and Myles is going to go to preschool 2 days a week. I might actually get a morning or two that is kidless...woohoo!! Take care and best of luck with everything.

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